Spina bifida registry and urologic care for young children
Official title: National Spina Bifida Patient Registry and Urologic Management of Young Children with Spina Bifida - Component B
Funded at Duke University · NIH-11403053 · Data updated 2026-11-12
This project gathers health and treatment information from people with spina bifida to see how urologic care affects young children's bladder and kidney health.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Duke University NIH-funded |
| Lab location | 1 site (Durham, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2020 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001278-05M002 |
| Project ID | NIH-11403053 on NIH RePORTER |
Who could benefit from this research
✓Could help
Young children with spina bifida (and their families) who receive care at participating clinical centers are the ideal candidates.
✕Less likely to help
People without spina bifida or patients who do not receive care at participating centers are unlikely to directly benefit from this project.
What this research studies
From my family's perspective, this project signs up children with spina bifida into a national registry and collects medical records, test results, and details about bladder and kidney care. Participating clinics enter standardized information over time so doctors can compare different approaches used for infants and toddlers. Joining may involve routine clinic visits, sharing medical records, and allowing clinicians to record urinary tests and imaging results. The goal is to use real-world data to help clinics identify urologic practices that lead to better outcomes for young children.
Why it matters
Potential benefit: If successful, the work could help doctors choose urologic treatments that better protect bladder and kidney health in children with spina bifida.
How similar studies have gone: Similar national registries for spina bifida and clinic-based urologic programs have helped improve care, although evidence about the best approaches for very young children is still growing.
Where this research is happening
-
Duke University
Durham, United States Active
Researchers
- Principal investigator: Wiener, John Samuel — Duke University
- Study coordinator: Wiener, John Samuel
Related research
Other NIH-funded projects on the same topics.
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Improving care and outcomes for people living with spina bifida in Wisconsin
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
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The National Spina Bifida Patient Registry at University of Pittsburgh
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
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Improving Care and Outcomes for People Living with Spina Bifida
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
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Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
This project uses registry data from Penn State’s Spina Bifida Clinic to understand how brain and spine-related issues influence when and why scoliosis surgery is needed in people with myelomeningocele.
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UMPIRE: Better Urologic Care for Babies with Spina Bifida
This grant tests how to best protect kidney function in newborns with spina bifida by comparing and refining urologic care practices across multiple hospitals.
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Spina Bifida Collaborative Care Network to Improve Outcomes
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.